Whose Rights Are We Protecting Anyway? 

By Jennifer Brooks


Closing the Gap, The Problem of Accessing Health Care • August/September 1999


For more than two years, members of 

the U.S. House of Representatives 

have been haggling—mostly along 

party lines—over what has now become 

known as The Patients’ Bill of Rights. While 

most of the Congress agrees a patient protection bill is needed, no consensus has been 

reached on what protections should be included in such a bill. In fact, there are several 

comprehensive patient protection bills currently before the House and Senate. 

Some key consumer protections under 

debate in Congress are: access to emergency 

care and specialty services, access to out-ofnetwork providers, access to clinical trials, the 

right of doctors to define medical necessity, 

the right to an external appeal, disclosure of 

treatment options, disclosure of financial incentives to deny care, and the right to sue 

health plans for damages. 

The Senate bill 

In July 1999, the Senate narrowly passed health care consumers. Senate Republicans A House compromise? 

the new Republican Patients’ Bill of Rights argue their bill is reasonable in that it protects 

Plus Act (S. 1344) by a 53-47 vote. The bill, people but preserves their freedom to choose In August 1999, House Commerce 

delivered by Senate Majority Leader Trent and keeps costs down. Committee member Charlie Norwood (RLott (R-MS), provides language on the right The Democrats call the bill a “sham.” GA) and the panel’s ranking Democrat, John 

of an external appeals process. This would Their proposal, which failed in the Senate by Dingell, Jr. (D-MI), came up with a manallow the federal government to slap $10,000 a 53-47 vote, allows patients to sue health aged care bill that is generating bipartisan 

fines against any health plan that does not plans in state court if their plans’ denial or support in the House. The Norwood-Dingell 

comply with review deadlines and an addi- delay in benefits caused them harm. And the bill, the Bipartisan Consensus Managed Care 

tional $10,000—awarded to the patient— Senate Democrats’ bill covers all 161 million Improvement Act (HR 2723), would proif the health plan does not comply with a privately insured Americans. The Senate Re- vide protection for all 161 million privately 

reviewer’s decision. publican bill only protects 48 million Ameri- insured Americans and include the right to 

The Senate bill also includes rights to cans enrolled in self-funded health plans for sue managed care companies in state court 

emergency care, access to specialists, points- most provisions; some are broader. Republi- for damages. The plan also includes a 

of-service, direct access to OB/GYNs, conti- cans say individual states should regulate “whistleblower” provision that would prenuity of care, access to clinical trials, provider health insurance for the remaining 113 mil- vent managed care companies from retaliatnon-discrimination, prohibition of gag lion Americans with private insurance who ing against doctors and nurses who raise conclauses, and protection against genetic dis- are not exempt from state regulation. cerns about their patients’ care. 

crimination and disclosure of consumer in- President Clinton has held to his posi- The bill has the support of President 

formation. tion that any patient protection bill must Clinton, as well as the American Medical AsWhile the revised Republican bill is more cover everyone with private health insurance. sociation and more than 30 other physician, 

comprehensive than prior versions, oppo- Such legislation must include the ability of labor, and consumer groups. 

nents argue it leaves off several essential pro- physicians to make necessary treatment and In response, Tom Coburn (R-OK) and 

tections like a patient’s right to sue a health medical decisions. And he insists it must have John Shadegg (R-AZ) announced plans to 

plan, a physician’s authority to managed care liability provisions, including offer an alternative Republican 

determine medical necessity, and a patient’s right to sue, before he signs it into 

coverage for all 161 million law. continued on page 2>>>> 

Office of Minority Health Resource Center 1 U.S. Department of Health and Human Services 
Whose Rights Are We Protecting Anyway? 

By Jennifer Brooks


Closing the Gap, The Problem of Accessing Health Care • August/September 1999


bill that would also cover all privately insured 

Americans. The bill would include the right 

to sue health plans, although lawsuits would 

only be allowed in federal rather than state 

court to eliminate the threat of exorbitant 

jury awards. 

The Coburn-Shadegg proposal includes 

a portion of the Republican tax relief package (H.R. 2488), which allows people to get 

deductibility for health insurance and longterm insurance expenses if they pay at least 

half the premiums. Their bill also includes 

provisions to expand medical savings accounts, but it has yet to generate the kind of 

support it needs to pass. 

Foes of the Norwood-Dingell plan, including business and health insurance groups, 

have been running advertisements against the 

bill. But these groups are not exactly thrilled 

about the Coburn-Shadegg bill either. They 

are trying to encourage House Republicans 

to consider an alternative bill that excludes 

liability altogether, according to a report from 

the Bureau of National Affairs. 

Twenty-one House Republicans— 

many of whom are physicians—said they 

would vote against the Coburn-Shadegg bill 

unless its patient protection provisions are 

strengthened. These Republicans, along with 

the House Democrats—all of whom are expected to support the bill—would produce 

enough votes to pass the Norwood-Dingell 

bill. 

Where do we go from here? 

Everyone will have to wait and see how 

the House proposals play out when the leadership allows votes to be brought to the House 

floor. If either of the House bills pass, the 

House and Senate will be in direct conflict. 

The Republican leadership in the Senate has expressed strong opposition to liability provisions because they say it would only 

drive up health care costs. But the President 

has promised to veto the Senate bill because 

it excludes liability. 

And the House Democrats, along with 

the 21 Republicans, won’t endorse any House 

bill that does not include liability. 

So the fate of the patients’ bill of rights 

will be left up to action in the House and 

then to the House-Senate conference committee who will face the difficult task of deciding what provisions to keep. 

Consumer advocates fear the legislation 

will inevitably die because the conference 

committee will not be able to reach consensus. Business groups do not want legislation 

passed that, they say, would only hurt consumers in the long run. 

President’s Commission Identifies Key Consumer Protections 

Not everyone who has health insurance feels confident his or her health plan will be there when needed. 

In fact, one of the biggest problems many insured Americans face 

is that their health coverage lacks some of the basic protections that 

should be afforded to everyone. 

Responding to complaints by the American public about managed care and its impact on the quality of health care, President Clinton 

appointed the Advisory Commission on Consumer Protection and 

Quality in the Health Care Industry in 1997. The Commission informed the President of changes occurring in the health care system, 

and recommends necessary measures to promote and assure health 

care quality and value. 

The 34-member Commission, cochaired by Donna E. Shalala, 

Secretary of Health and Human Services, and Alexis M. Herman, 

Secretary of Labor, was made up of individuals from a variety of 

backgrounds including: consumers, health care providers, businesses, 

health plans, state governments, and health care quality experts. 

A major undertaking of the Commission was to draft a “consumer bill of rights.” In March 1998, the Commission released a 

report that identified some key consumer protections. These protections included: 

• Information Disclosure. Consumers have the right to receive accurate, easily understood information—including information on health plans, health professionals, and health 

care facilities—to help them make informed health care 

decisions. 

•	 Choice of Providers and Plans. Consumers have the right to access 

emergency services when and where the need arises. 

•	 Participation in Treatment Decisions. Consumers have the right 

and responsibility to fully participate in all decisions related to 

their health care, or be represented by parents, guardians, or other 

conservators if they are unable to do so. 

•	 Respect and Nondiscrimination. Consumers have the right to considerate, respectful care from all members of the health care system 

at all times and under all circumstances. 

•	 Confidentiality of Health Information. Consumers have the right 

to communicate with health care providers in confidence and to 

have the confidentiality of their health care information protected. 

Consumers also have the right to review and copy their own medical records and request amendments to their records. 

•	 Complaints and Appeals. Consumers have the right to a fair and 

efficient process for resolving differences with their health plans, 

health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review. 

•	 Consumer Responsibilities. Consumers are expected and encouraged to assume reasonable responsibilities. Greater individual involvement by consumers in their care increases the likelihood of 

achieving the best outcomes and helps support a quality improvement, cost-conscious environment. 

Office of Minority Health Resource Center	 2 U.S. Department of Health and Human Services